HAPPY BIRTHDAY NICOLE GRACE!

#1 · July 10, 2004, 3:56 pm

Quote from Forum Archives on July 10, 2004, 3:56 pm
Posted by: lifeunlimited <lifeunlimited@...>
Dear Friends, family, and other prayer warriors.

Today is a special day. Nicole Grace, our "Victorious Heart" has reached her first milestone, beating heavy odds against her. She has now lived a full month. Happy one-month birth anniversary, Nicole! We've posted three new photos on the website at http://community.webshots.com/user/01lum.

Less than 50% of the babies born with Mosaid Trisomy 18 live that long. We rejoice before the Father that, not only has she survived, but she has significantly improved in many areas.

> Her heart arythmia has stabilized.

> Her billiruben count has dropped significantly.

> Her use of oxygen has reduced dramatically.

> She has been able to feed some from a bottle.

> She has had slight weight gain.

These improvements are monumental points of praise and rejoicing. However, they do not minimize her continued critical condition that require our ongoing intercession in her behalf. So, we praise God enthusiastically as we continue to petition God passionately for continued improvements. As you will read below, it may be a very long time before we know the ultimate outcome of some of these continuing issues. But, this much we can conclude at this point:

+ She has survived longer than more than half the babies do.

+ There has been definite improvements in the above areas, and perhaps in others.

+ If her heart conditions of holes between chambers and malformed and malfunctioning valves have not improved (or don't in the future), surgery is probable during her infancy.

+ There are major hurdles yet to face concerning her future physical and mental competency that only time will reveal.

+ There is a very long road ahead for Nicole, for Jim and Deanna, for Michael and JoyLinn, for their church, and for our family in general.

+ Prevailing, authoritative, desperate, faith-driven prayer and fasting and still passionately needed and requested.

So, dear friends, please keep these situations in mind as you continue praying. And remember . . . . PLEASE saturate your praying with the following elements about which we recently wrote:

    Praise

    Blessing

    Warfare

    Intercession

Read earlier letters to review those principles.

Now, here are the two most recent reports we've received. After you read them, consider the following:

> Wish Nicole Grace a happy birthday.

> Drop Jim and Deanna a note of celebration and assured intercession at prov2525@socket.net.

> Share these reports and requests with your church tomorrow.

> Refresh your commitment to continued long-term intercession. There are many specific requests previously mentioned in addition to those noted below. List them, post them, and address them directly and specifically.

Gratefully in His Bond of Mercy and Expressions of Grace,

Bob and Jo Ann

NOW ---- here are exerpts from the two most recent notes from Deanna and Jim:

--------------------------

Thursday night, July 8th:

Well, today was a strange day in a way. We arrived at the hospital to find that Nicole had been moved to a different room . . . . to make room for some more babies (they have 68 in a unit staffed for 55). They moved her into a room that's basically isolated and with another baby . . . . that has MRSA as well. (MRSA, by the way is one of those hospital "staph infections" that isn't often too big a deal, but precautions have to be made.) . . . . We also don't have other parents to talk with to help pass the time; so we get a lot sleepier just sitting there . . . . For those who might come to visit, she's now in room C8.

The great news of the day is that her bili counts were down - to about 6.5. Jim . . . . had personally been praying that it would drop from the 8 range (that it was when last measured) down into the 6's at today's check . . . . a lot better than the 11 of a week ago. He's now praying it will be in the 2's range next time they check it.

Her breathing is still labored as yesterday, but like all her other "mal-functions" it doesn't appear to be causing her problems (and her breathing was not QUITE as bad as yesterday.) She ate about another 11 cc's from a bottle today. Still a long way to go to take a full bottle 8 times a day; but she is showing some slight improvement. Keep praying for her ability to take a bottle. That would be a HUGE accomplishment for her at this point.

It's a strange feeling to watch her at times and from all basic appearances not be able to see anything wrong with her - yet know what the tests have so far shown about her brain, heart, cells, etc. It is sometimes surreal to pray for the Lord to heal her of things you cannot visibly see and unless they for some reason re-run tests, we might never know if they are healed or not.

As we've mentioned; we are praying for complete healing and reversal of the effects of the trisomy 18 and all it involves. If that is not His plan, we are praying at least for her to be a living paradox - which so far she is. Things that are "wrong" are not affecting her. She's functioning in spite of them. (That's why I call it "functional healing.") We pray that would continue as she ages and develops as a normal baby. We won't know until she's walking age, whether or not she is healed or simply walks even though the doctors say she shouldn't, etc.

. . . . We meet with the doctors tomorrow night at 5:00 pm to see what the big picture plan looks like at this time. Also, the occupational and physical therapists have not yet been into work with her as originally expected to happen yesterday or today. That will be one of our questions for the doctors tomorrow.

Continue to pray fervently as you have.   Consider fasting if you haven't yet. Keep being the Church - you all are awesome and serve a mighty God.

WWJ,

Deanna and Jim

Friday night, July 9th:

Well, there are days like yesterday when . . . . Nicole seems so normal and you sometimes wonder why she's in the hospital. And then there's days like today when she drank 20 ml of her bottle, but then "crashed." Her oxygen saturation levels dropped dangerously low and her heart rate dipped as well. They had to turn up her oxygen through the nasal prongs and also "bagged" her. (That's kind of like CPR only you use something kind of like a bellows instead of your own breath.)

She returned to normal within a couple of hours, but it was a reminder of just how weak and potentially unstable she is. They're guessing that eating that little bit from the bottle wore her out. OR. she had what is called a "tet spell" related to her heart defects. Needless to say, we didn't get to hold her today . . . .

We had the meeting with the doctors today about bringing her home. Basically, SHE has to gain weight. STEADILY. (She lost again today and is back at birth weight again. Measuring progress in ounces and milliliters is frustrating experience.)

Her heart is as stable as it's going to be. She can be sent home on the nasal prongs. She'll have portable oxygen and a monitor to tell us when her saturation levels get too low. So, in order to come home, not [just] transferred to nearby hospital, the biggest issue is continued weight gain. She will also have to have a "G-Tube" put in since she certainly, at this point, can't handle bottle feeding. We can continue trying to get her to bottle feed and later, eat baby food, but to get her up to taking full bottles 8 times a day is a many month-long challenge. We're not waiting that long to bring her home - we'll take the feeding tube and our own home anyday.

As for us, WE will have to have an infant CPR course, have her tested in her car seat (she has to be in the car seat for 3 hours hooked up to the
monitors to see how she tolerates the position and being strapped in), get trained on some equipment and such, and several other little training-type things. As far as a time-frame, they're still talking the 2 week range. Again, it's largely dependant upon her gaining and sustaining growth.

I keep reminding myself: marathon, not sprint. But, after conversations with the doctors today, the thought of that marathon has me already tired. To be honest, right now, I'm a bit overwhelmed by it all . . . . that's a bit how I felt today while talking with the doctors. The maze of doctors and equipment and appointments and follow-ups and government programs and this and that. like I said: overwhelming right now. Just because we will be home one day soon, there will still be lots of miles of travel, and normal routine will not return for some time - and then it will be a very different "normal".

Still, as we were reminded at lunch, God is . . . . always has been . . . . and always will be . . . . nothing but faithful. As we visited with Duane [our Director of Missions], we were able to tell story after story of His faithfulness . . . . some of which I had forgotten, but the stories were spurred on by the conversation. It was refreshing. encouraging . . . . powerful medicine. We're going to need many doses of it in the future.

Thank you for not only praying for Nicole, but praying for us as well. By the way, please pray for our other children also. This has got to be a very strange time for them, and as "home" gets closer and closer, it's all going to change again.  Obviously, caring for Nicole is going to change everything about "normal" (as Deanna added above.) Michael and JoyLinn are going to have a lot to deal with also, pray for them.

WWJ,

Jim and Deanna

-----------------

Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
Subscribe to "Hope4Kyiv" letter
  --  To unsubscribe, send ANY message to: hope4kyiv-unsubscribe@welovegod.org  

Posted by: lifeunlimited <lifeunlimited@...>

Dear Friends, family, and other prayer warriors.

Today is a special day. Nicole Grace, our "Victorious Heart" has reached her first milestone, beating heavy odds against her. She has now lived a full month. Happy one-month birth anniversary, Nicole! We've posted three new photos on the website at http://community.webshots.com/user/01lum.

Less than 50% of the babies born with Mosaid Trisomy 18 live that long. We rejoice before the Father that, not only has she survived, but she has significantly improved in many areas.

> Her heart arythmia has stabilized.

> Her billiruben count has dropped significantly.

> Her use of oxygen has reduced dramatically.

> She has been able to feed some from a bottle.

> She has had slight weight gain.

These improvements are monumental points of praise and rejoicing. However, they do not minimize her continued critical condition that require our ongoing intercession in her behalf. So, we praise God enthusiastically as we continue to petition God passionately for continued improvements. As you will read below, it may be a very long time before we know the ultimate outcome of some of these continuing issues. But, this much we can conclude at this point:

+ She has survived longer than more than half the babies do.

+ There has been definite improvements in the above areas, and perhaps in others.

+ If her heart conditions of holes between chambers and malformed and malfunctioning valves have not improved (or don't in the future), surgery is probable during her infancy.

+ There are major hurdles yet to face concerning her future physical and mental competency that only time will reveal.

+ There is a very long road ahead for Nicole, for Jim and Deanna, for Michael and JoyLinn, for their church, and for our family in general.

+ Prevailing, authoritative, desperate, faith-driven prayer and fasting and still passionately needed and requested.

So, dear friends, please keep these situations in mind as you continue praying. And remember . . . . PLEASE saturate your praying with the following elements about which we recently wrote:

Praise

Blessing

Warfare

Intercession

Read earlier letters to review those principles.

Now, here are the two most recent reports we've received. After you read them, consider the following:

> Wish Nicole Grace a happy birthday.

> Drop Jim and Deanna a note of celebration and assured intercession at prov2525@socket.net.

> Share these reports and requests with your church tomorrow.

> Refresh your commitment to continued long-term intercession. There are many specific requests previously mentioned in addition to those noted below. List them, post them, and address them directly and specifically.

Gratefully in His Bond of Mercy and Expressions of Grace,

Bob and Jo Ann

NOW ---- here are exerpts from the two most recent notes from Deanna and Jim:

--------------------------

Thursday night, July 8th:

Well, today was a strange day in a way. We arrived at the hospital to find that Nicole had been moved to a different room . . . . to make room for some more babies (they have 68 in a unit staffed for 55). They moved her into a room that's basically isolated and with another baby . . . . that has MRSA as well. (MRSA, by the way is one of those hospital "staph infections" that isn't often too big a deal, but precautions have to be made.) . . . . We also don't have other parents to talk with to help pass the time; so we get a lot sleepier just sitting there . . . . For those who might come to visit, she's now in room C8.

The great news of the day is that her bili counts were down - to about 6.5. Jim . . . . had personally been praying that it would drop from the 8 range (that it was when last measured) down into the 6's at today's check . . . . a lot better than the 11 of a week ago. He's now praying it will be in the 2's range next time they check it.

Her breathing is still labored as yesterday, but like all her other "mal-functions" it doesn't appear to be causing her problems (and her breathing was not QUITE as bad as yesterday.) She ate about another 11 cc's from a bottle today. Still a long way to go to take a full bottle 8 times a day; but she is showing some slight improvement. Keep praying for her ability to take a bottle. That would be a HUGE accomplishment for her at this point.

It's a strange feeling to watch her at times and from all basic appearances not be able to see anything wrong with her - yet know what the tests have so far shown about her brain, heart, cells, etc. It is sometimes surreal to pray for the Lord to heal her of things you cannot visibly see and unless they for some reason re-run tests, we might never know if they are healed or not.

As we've mentioned; we are praying for complete healing and reversal of the effects of the trisomy 18 and all it involves. If that is not His plan, we are praying at least for her to be a living paradox - which so far she is. Things that are "wrong" are not affecting her. She's functioning in spite of them. (That's why I call it "functional healing.") We pray that would continue as she ages and develops as a normal baby. We won't know until she's walking age, whether or not she is healed or simply walks even though the doctors say she shouldn't, etc.

. . . . We meet with the doctors tomorrow night at 5:00 pm to see what the big picture plan looks like at this time. Also, the occupational and physical therapists have not yet been into work with her as originally expected to happen yesterday or today. That will be one of our questions for the doctors tomorrow.

Continue to pray fervently as you have. Consider fasting if you haven't yet. Keep being the Church - you all are awesome and serve a mighty God.

WWJ,

Deanna and Jim

Friday night, July 9th:

Well, there are days like yesterday when . . . . Nicole seems so normal and you sometimes wonder why she's in the hospital. And then there's days like today when she drank 20 ml of her bottle, but then "crashed." Her oxygen saturation levels dropped dangerously low and her heart rate dipped as well. They had to turn up her oxygen through the nasal prongs and also "bagged" her. (That's kind of like CPR only you use something kind of like a bellows instead of your own breath.)

She returned to normal within a couple of hours, but it was a reminder of just how weak and potentially unstable she is. They're guessing that eating that little bit from the bottle wore her out. OR. she had what is called a "tet spell" related to her heart defects. Needless to say, we didn't get to hold her today . . . .

We had the meeting with the doctors today about bringing her home. Basically, SHE has to gain weight. STEADILY. (She lost again today and is back at birth weight again. Measuring progress in ounces and milliliters is frustrating experience.)

Her heart is as stable as it's going to be. She can be sent home on the nasal prongs. She'll have portable oxygen and a monitor to tell us when her saturation levels get too low. So, in order to come home, not [just] transferred to nearby hospital, the biggest issue is continued weight gain. She will also have to have a "G-Tube" put in since she certainly, at this point, can't handle bottle feeding. We can continue trying to get her to bottle feed and later, eat baby food, but to get her up to taking full bottles 8 times a day is a many month-long challenge. We're not waiting that long to bring her home - we'll take the feeding tube and our own home anyday.

As for us, WE will have to have an infant CPR course, have her tested in her car seat (she has to be in the car seat for 3 hours hooked up to the
monitors to see how she tolerates the position and being strapped in), get trained on some equipment and such, and several other little training-type things. As far as a time-frame, they're still talking the 2 week range. Again, it's largely dependant upon her gaining and sustaining growth.

I keep reminding myself: marathon, not sprint. But, after conversations with the doctors today, the thought of that marathon has me already tired. To be honest, right now, I'm a bit overwhelmed by it all . . . . that's a bit how I felt today while talking with the doctors. The maze of doctors and equipment and appointments and follow-ups and government programs and this and that. like I said: overwhelming right now. Just because we will be home one day soon, there will still be lots of miles of travel, and normal routine will not return for some time - and then it will be a very different "normal".

Still, as we were reminded at lunch, God is . . . . always has been . . . . and always will be . . . . nothing but faithful. As we visited with Duane [our Director of Missions], we were able to tell story after story of His faithfulness . . . . some of which I had forgotten, but the stories were spurred on by the conversation. It was refreshing. encouraging . . . . powerful medicine. We're going to need many doses of it in the future.

Thank you for not only praying for Nicole, but praying for us as well. By the way, please pray for our other children also. This has got to be a very strange time for them, and as "home" gets closer and closer, it's all going to change again. Obviously, caring for Nicole is going to change everything about "normal" (as Deanna added above.) Michael and JoyLinn are going to have a lot to deal with also, pray for them.

WWJ,

Jim and Deanna

-----------------

Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
Subscribe to "Hope4Kyiv" letter

  --  To unsubscribe, send ANY message to: hope4kyiv-unsubscribe@welovegod.org